Welcome to the NETs Group! Come say hi.

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.

Thank you--that is so kind.

Thanks!

@pennypowell
Lanreotide is similar to Octreotide and should help with symptoms. Many members of this discussion group have used it with success.

I certainly respect your decision, @mir123, I don't think you are at all eccentric. Yes, we all have to treat our NETs in a way that is respectful to our body and that is different for each person.

Please let me know what your next steps will be. Will you post updates as you are able?

Thank you for the support! No chemo--I've declined it due to kidney disease, numerous other co-morbidites, and personal preference. I'm going for a low-key approach with emphasis on quality of life and so far this is a good for me and my family. I realize this may be a bit eccentric, and I'm supportive of folks doing something different, too. And treatments I am getting appear helpful--so I guess it is kind of a middle of the road view.

Hi,
It is lanreotide.
Thanks,
Penny

Hello @pennypowell

I'm glad to hear that she wants to see another oncologist.

You mentioned that the doctor wants to give her an injection. Did the doctor indicate that the injection was octreotide?

He offered an injection that will help with symptoms. Because she isn’t able to do the scan he recommended she start hospice. She wants to talk to another oncologist in our town. She is really tired and in going to work on getting her affairs in order. She has an appointment with her internist and endocrinologist on Monday.

Carcinoid Specialists in The Villages
I live in The Villages. I am looking for a Carcinoid Specialist here. Can anyone recommend someone?
Thank you.